Okay, so this post is going to be a hard post to write. I have wondered whether or not this was a good move or not. To be so open, so honest and raw.
Over many, many years I have battled with poor health but I have hidden it. People may or may not of noticed the suffering and pain I was in. Often it was too complex for me to begin to understand, let alone anyone else. They may of thought I looked a little poorly, or maybe even thought I was just being a drama queen - I wish that was the case sometimes.
I was and still am extremely conscious of how people see me. Judgements are often harsh, rarely true but deeply upsetting. At first my house was my haven. My escape. I could hide from the world. Recharge my batteries and then face the world with a glowing smile, so nobody would question me as being weak or 'not coping.' I wanted to fit into the world, but somehow I didn't feel I did fit. I could never socialise like my friends, and would joke about not drinking and smoking. Making my lifestyle choices as the main excuse for not going out, however it was more because I would be fatigued by just getting ready to go out. Let alone the whole night out. I couldn't work like everyone else, I was always feeling under the weather, tired and rarely slept. I felt uncool and knew that I was seen as boring. Who wants to hang out with someone who can only tolerate a couple of hours out of the house? No-one.
I lost friends, as relationships broke down and I lost my hobbies and passions. I had to channel my energies in a positive way. Discovering new hobbies and creating a new circle of friends and support. Which social media has been a GOD SEND for. I am so grateful for all the online friendships and family I have made over the years. I am also SO, BEYOND WORDS grateful to the friends and family that have stayed by my side and fought with me, through everything! Despite everything. Never questioning or judging me.
***
TIME. Time is precious, we all know that. We all have a limited amount. When you are struggling, depressed and alone however time can be a curse. It is never-ending and seems to pause. Time can then cause us to sit, overthink, guilt-trip ourselves and question our own existence. I had a choice, many years ago. To just let time pass, do 'NOTHING' because physically and emotionally I was already drained or I could look at avenues I could explore, push myself, work with and bring some form of light and purpose into my life. This process doesn't happen over-night. It takes many long hours, so much effort, patience and strength. At first I read, I watched my idols. People I looked up to the most. I studied their lives, their personalities and careers; Monroe, Kennedy's, Churchill and so on. All of them had highs and serious lows in their lives but it never stopped them for making things happen, chasing their dreams and achieving greatness. Leaving their mark on the world.
I have always known that I am not someone who simply wants to fade away. Don't get me wrong, I am a realistic. We can't all be presidents and movie stars but if we help and save ONE life then we served a great purpose. It helped me 'accept' my pain and struggles a lot better. As in my eyes I would rather be struggling than have others suffer. Also my struggles were teaching me REAL life lessons. Something a textbook couldn't teach you. It was shaping me and helping me gain strength.
Monroe had her diary, her struggles, achievements and affairs all documented as proof and evidence that she was indeed a person... not an object as the world tried to brand her. I realised that I couldn't allow my health to define me, and I needed to document my life. The experiences, the relationships and adventures I had, had to prove I LIVED. I was a real person too. First, I wrote pads and pads of my daily thoughts, struggles and events. It really helped me offload and move on. Not allowing the empty hours to cause the dark thoughts to creep in. I then had to change up my baking hobby and re-invent my cooking into allergy free recipes and plant-based living. This was something, I felt a little more comfortable with sharing online. So here in 2016 was the birth of my blog. New products I had come across, recipes I was trying and out an how my diet was making me feel. All documented. I spent HOURS, researching recipes and recreating them. Cooking and snapping shots. I then decided I wanted to go one step forward and create a book with all the recipes I was enjoying. Which I did and I am so glad I did as it inspired me further..
I wasn't just mourning the loss of my swimming career but my passion for travel. Travel had opened doors for me. I was so interested in new cultures, ways of living and role models across the world - I wanted to study further. My health was causing travel to become HARD. So once again cooking and my purpose to create more work for myself over-ruled how I was feeling physically. I travelled and tried to document all the food and what kind of foods was the signatures in each countries. Luckily I managed to create UNITED TASTES OF AMERICA from my Route 66 trip before getting really poorly and being diagnosed with Lyme 10 months later. What people don't know about that Route 66 trip was how ill I had been before hand. We all get infections and viruses but I had been SERIOUSLY sick with a virus that was never explained. Only that I didn't eat for about a week because I couldn't stop being sick and I was hospitalised around two weeks before flying out. YET... as per, Sophie put on a front. I looked poorly, I was. BUT I tried to shake off all the upset I was feeling, the nerves about managing to travel and the sadness I felt about how I felt.
***
After being diagnosed and the flames inside being reignited because I was so PASSIONATE about NOBODY going through what I was going through and had been through, I found a new purpose within my campaign work. I began to be more open about my own HEALTH struggles and document it all online. In hope that people could relate, find comfort and reach out to me.
Still despite having a number of projects on the go and keeping myself busy. Being housebound most of the day and most of the time still made me feel 'lazy' and if I didn't fit in because I was being judged by what I did, or in some people's eyes. What I didn't do. Yes, knowing people judged not just my health, me as a person and my work DID and still does get me down. However, often I simply use it as a way of pushing myself further because I want to prove people wrong.
I have been blessed and I count my lucky stars everyday for the amazing opportunities I have experienced and they have helped unlock new hobbies and passions I didn't know I had, which in turn has lead to new projects. I am also SO grateful for all the support, love and kindness shown towards my projects and me as a person. Words can't begin to explain to me what it means. It really does keep me motivated, inspires me and keeping the creative ideas rolling in.
***
Last week was beyond tough and to tell you truthfully I am still coming to terms with it all. That is the bottom line. Emotionally and physically it is difficult to understand, get my head around and accept. I have felt poorly and really unwell for some time now. Life day by day gets harder to cope with and survive through. On the surface I look fine, maybe even at the top of my game and that truly is how I want people to see me. I want people to appreciate that I do actually 'work' and I don't just sit at home waiting for the sun to shine. However, it is important for me to be open and honest. Show the not so 'glamourous' pictures that show how sick I am, so people can have a chance to really understand this disease.
Maybe I have become a little fearless, reckless some may say. I am reaching the point where to be honest - I can't paint on the brave smile all the time when it's needed, I do eat things I know upset me BUT I LOVE THEM. I value life so much. I have always played by the rules, worked hard, being careful and it hasn't made me immune from pain, suffering and declining health. So, I have reached the point where sometimes I just want to LIVE, I want to enjoy things and have some pleasures in life. I am also allowing my walls to come down in the sense of being real with everyone, allowing myself to express my pain, upload the HARD pictures for even me to look at because they are a far cry from the strong, elite athlete from a decade ago.
The bottom line, and the point of this blog is, my health is critical at this point in time. I don't know what the future holds and it is scaring me beyond words. I don't even know what I hope from the future to be quite frank. I am trapped in a torture chamber I can't break free from. I can't have a rest-bite, I can't take a holiday and I can't 'sleep it off'. I am 25! 25, not 85 even though I feel 85. I don't frankly think I can face 60 odd years with this pain. My body is breaking down and I am heading back to Breakspear in 2 weeks time to see what the next steps are. My recent infusions at Breakspear were vitamin & ant-viral infusions to attack the viruses that were attacking my Vagus nerve, which links the brain, heart & gut. Examinations whilst I was there, showed that I have gastro internal bleeding which is causing acid to travel back up my throat not just causing damage to the stomach but the throat too and causing acid reflex, possible gallstones and my infusions had to be slowed because my kidneys were struggling. It has really scared me and kicked into touch how serious things are.
The timing of the end of my podcast series has worked well, because I am planning on taking this time to recharge and live a little. I AM BEYOND exhausted and I love my work I DO, of course I do. I only hope I have done enough to have left a large footprint on the world, and would never be someone who would simply disappear. I wanted to be open, so people understood why I may be a little quieter or not so 'on the ball.' I have been battling for many years. People need to realise how serious, debilitating and soul destroying this disease is and frankly I WOULDN'T WISH THIS HELL ON ANYONE. It may not be seen as 'deadly' to the medical community, but it really does TAKE and DESTORY lives.
I laugh my illness off, make jokes, smile, be positive and push my body all of which seem to be easy but are beyond difficult. I campaign hard for recognition, education and awareness of my disease but with that needs me being open about how it is destroying me. So, here we are.
I am feeling dead and buried already, I am exhausted in everyway and trying to deal with the sheer upset and pain in the best way possible.
It is important to NOTE, that it isn't just me suffering, friends, loved ones and family have to deal with this upset and pain as well. My Mum is always telling me to take a break, take some rest time but I never felt I 'deserved' a break because I felt everyone always thought I was always ON A BREAK. NOW, I have to take note. I want to spend time with the people I love, make memories and live life as much as possible. Please be respectful of my loved ones and support systems, they are doing their BEST to deal with this illness too! It kills me everyday, seeing how it is so soul destroying for them to deal with, see and cope with too. Lyme isn't as understood as cancer, but please realise and try to understand that it is HELL and it isn't a walk in the park. We NEED to stop this global epidemic before it goes beyond our control and more lives are lost to it.
If you can remember my struggle and fight with me then we can protect & save so many lives. I often take my own life out of the equation because it is other's who matter.
Thank you for taking the time to read this post & your support across all my ventures and projects.
NOTHING IS A GIVEN, CHERISH EVERY MOMENT, TELL YOUR LOVED ONES YOU LOVE THEM AND LIVE LIFE.
My love always,
Sophie
xoxo